Improving Risk Prediction in Non-ischemic Cardiomyopathy Using an Individualized Multimodality Approach Registry, Biobank, and Imaging Data Repository

What this Trial Is About

Researchers are creating a central database called CaNICM that includes a biobank and an imaging data repository for patients with non-ischemic cardiomyopathy (NICM) and their at-risk family members, including those carrying rare genetic variants linked to NICM but showing no symptoms. The goal is to improve the ability to predict heart rhythm disorder risks, optimize screening timing and methods for family members, and find better early treatments to prevent or slow the disease. A future phase aims to evaluate the risk prediction model's performance in clinical settings compared to current approaches. Participants include patients diagnosed with NICM and their first-degree relatives. Clinical data, imaging (cardiac magnetic resonance and transthoracic echocardiography), ECG data, and blood samples for genetic studies will be collected. Biospecimens are stored under strict conditions for long-term use. Imaging and ECG data are centrally interpreted and securely stored. Family members will have follow-up visits every three years with ECG, imaging, and Holter monitoring recommended. Participants will provide baseline clinical information through questionnaires and medical records. Follow-up involves yearly clinic visits or phone contact to assess health status and heart-related events, with all clinical data entered into a secure electronic database. Relevant medical reports and imaging from follow-up are also collected. Surgical tissue samples will be gathered if applicable. Participants may provide email contacts for study updates and optional future studies. The study involves long-term monitoring with data stored securely for up to 50 years.

Non-ischemic Cardiomyopathy Registry, Biobank and Imaging Data Repository